Being Vigilant vs Being Aggressive

We are finally home after a LONG day at Hopkins and then the pediatrician. We started the day with an appt with Dr. A at the surgery clinic. We brought Jack in because he's been vomiting for the past 1-2 months on and off and has also been hit or miss with eating. We arrived with our chest xrays from Frederick Memorial in hand. The xrays were taken last month (2 weeks apart) when they suspected that Jack had RSV and were concerned about pneumonia. I was concerned that I saw a loop of bowel that reherniated. After a good conversation it was decided that Jack should up his dose of Prevacid to 15 mg/ twice a day. So far the single dose per day was already giving us some improvement. I then asked if we could look at the xrays because I wanted to know what this mystery area really was. Dr. A put the xray on the lightbox and I asked if it was bowel and Jack (as if on cue) said, "UH OH!!". It was really funny. In the end we're basically not sure if it's a reherniation or if the patch is just being pushed up a little. The main point is that he's not as symptomatic as he was when he had a severe reherniation. With these kids you want to avoid surgery as much as possible because over time they will just get more scar tissue and it will overall increase the likelihood of subsequent reherniations the more you get in there and mess with things. Dr. A's strategy is to be vigilant but not aggressive. We will try increasing the prevacid to see if that helps and will return in 1 month. We won't do additional imaging now unless things worsen. I told Dr. A that if we did a CT scan and I saw a reherniation I'd freak out so I'm comfortable with a more conservative approach. The bigger and stronger Jack gets, the better. I think that eventually we will need to revisit this with surgical intervention but we're just going to keep a very close eye on him for now.

After our appt we grabbed some lunch in the newly renovated Hopkins cafeteria. My friend Tracey came with Jack and I to the morning appt and then we met our friend Gina Koger at 1pm and had a "CDH Parents' Network" kickoff meeting with Dr. A and Dr. B, the head of maternal fetal medicine. A genetics councilor (Ginny) also attended. Tracey, Gina and I want to start a local CDH parents' group and we are fortunate to have the full support of Hopkins. We went over what we see as the goals for the group, what we can offer to Hopkins, how to get the group off the ground and how it can benefit parents. Everyone was extremely enthusiastic and I think we'll be able to offer a lot of support to other families facing a CDH diagnosis, treatment and recovery. Between Gina, Tracey and myself we have seen the spectrum of CDH. There's a lot of work to be done but I can't wait. The plan is to start off with our focus on Hopkins but one day expand to the rest of Maryland since Children's National also sees CDH patients. Jack was a riot during the meeting. He was so overtired and spent the entire time talking in babble. He ended the meeting by hanging out behind Dr. A and Dr. B's chairs. When he walked back over to me I realized he had taken a wicked poop! I felt so bad! All I could say was, "At least we know his bowels are working!". Haha!

Tracey, Jack and I ended our day with a visit to the pediatrician and Jack's RSV shots. I HATE holding him down for those shots!

Tomorrow we head back to Hopkins for the cardiology follow up. Hopefully the echocardiogram goes well and Jack is good with the holter!

~Vic